First Side Effect Appears

(In this pic with B2, you can't tell Ed has brain cancer!)

I got a call at 7:10 this morning...my Mom was upset and crying. She said Ed's tongue was bleeding. She said his tongue was red all over like he had been sucking on a red hard candy, but he had had nothing to eat or drink yet. She said they dabbed it with a wash cloth and it came away with blood on it.

I told her I would leave right away and come get him and take him to the doctor, but she suggested I call the doctor instead. I placed a call with the answering service for the doctor on call at 7:14am and the operator said I would get a call back.

I talked to Mama more and she said there appeared to be two 'splits' in Ed's tongue and upon shining a flashlight at the back of his mouth she could tell his throat was angry red and irritated in appearance. She said that Ed said no when she asked if it was painful...in either of the tongue or throat. She also said that this was difference in appearance from the mouth fungus, thrush, that he'd had before. It was not yellow and crusty like the mouth fungus.

I went on to work and by 8:00 am I still had not got a call back from the doctor on call from the staff at the North East Georgia Cancer Care Center. I decided to call the center and ask for a nurse. I spoke to the very lovely and helpful Dawn. After listening carefully to my description given to me by Mama, she explained that this is actually quite common in cancer patients. I told her my Mama had started having Ed wash his mouth with Magic Mouthwash and it was suggested by a family friend who's mother and mother-in-law both took chemo, to wash his mouth with a solution of water, salt and hydrogen peroxide. She agreed both those were good for him and do the salt water solution after meals.

Ed had not wanted to eat breakfast because of the blood, but after washing the blood out his tongue immediately started to look better, and after looking at it for himself in the mirror, he agreed to eat. The nurse at Cancer Care urged us to keep him eating and drinking plenty of fluids.

Later in the day, Mama reassured me Ed was fine, feeling better and enjoying a visit from friends. Thank God, he and we have survived yet another bump in the road on this journey with brain cancer.

A New Look

Hey - Just wanted to change Ed's page up a bit! I think blue is more 'his color'. He looks good with blue! Ed went in today to get his blood work done in preparation for his next dosage of chemo/Avastin tomorrow. So far, he has very little side effects from the first dose two weeks ago. He has been doing more for himself, and has had two small episodes with diarrhea, and one small episode of nausea, but that is all tolerable and manageable.

My sister-in-law was supposed to take Ed tomorrow, but she smashed her pinkie a few weeks ago and is having a bad reaction to the medication she ha s been taking for it, and now she is too sick to take him. B2 is still unemployed, so he has graciously accepted responsibility for taking Ed to get chemo a second time. I told him I will give him a break in two weeks when Ed is due for Dosage 3.

My problem is I don't get paid for days off from work, and I will not get paid for being off for the 4th of July holiday (on July 3), but it's all good. God has always provided in the past, and he will continue to do so. I hope all goes a little more smoothly at the Cancer Center tomorrow...hopefully, my brother will have no run-ins with the nurses.

Smaller Head Lump

The lump on Ed's head - where the tumor lays beneath bone and skin and titanium - has gone down. It appears the swelling in his face has gone down, also. Mama reports that he has one bout of diarrhea, but nothing serious. She also says that Ed has been doing more to take care of his personal needs such as getting a drink from the fridge and bathing unassisted. One morning he stood from the kitchen table and walked to the stove without his walker. She is unsure if he did this on purpose, or just forgot to use it! She is excited by his progress and I think this boosts both my Mama and Ed's moods and spirits. His speech has not improved a whole lot, but he has taken to wearing his dentures more often and I do think that helps with his speech being more easily understood.

Here are pictures taken this weekend:



Picture 1: Ed - he wanted a picture up close to see if his smile is straightening up yet...it is!

2: Ed and my cousin Stacy.

3: Ed, Mama and granddaughter Arthur

4: Ed and Arthur

First Avastin Treatment Goes Well

Ed received his first treatment of Avastin last Wednesday. The nurse told me he was to arrive at 9:20 a.m., and by 9:40 a.m., he would be hooked up to his I.V. and begin his Avastin/chemo drug infusion. My brother (B2) elected to take Ed to his first treatment, as he is currently on a (very) flexible work schedule (as in laid off and working whenever he can).

Therefore; I do not know what happened except for the bits of info I have gotten third hand, from my Mom, and bits I have gotten from Ed himself. Remember, Ed's tumor has affected his speech and it is very difficult for him to express himself and difficult to understand what he does manage to get out. For whatever reasons, Ed's I.V. didn't get started until about ten minutes till eleven that morning. He and my brother didn't leave the cancer center until about 4:30 pm. So I take it the chemo treatment takes approximately five hours to complete.

Somewhere in between, B2 went to get them lunch which they ate at the center, and my brother had a run-in with a nurse who apparently wasn't looking where she was going and nearly plowed through my dad and brother while they were making a trip to the restroom. A trip to the restroom involves pushing my dad in a wheelchair and pulling the I.V. tower along behind.

My brother has many gifts, skills, and attractive attributes. Patience is not one of them. According to rumor he had words with the nurse. I am glad I was not present.

I think for the most part, everyone at the cancer center is very focused on the patient and tries hard to be kind, caring, informative and helpful. Dr. Splichal is especially kind and knowledgeable. The nurses seem to truly care and take pains to be gentle and soft spoken. Even the front desk clerk and the check-out clerks are usually very pleasant and sweet. I have run into one nurse (aid???) that I didn't find to be very friendly or approachable, but I've not seen him at the office but once. I think it takes a very special person to work with people who are very sick and/or dieing. I think these persons have to have something inside them that allows them to be knowledgeable, but also sympathetic and supportive. They have to have a little bit of angel inside them to be able to have patience with the cancer patient and their families. I thank God for these doctors, nurses, aids, clerks, and anyone my dad or us come in contact with.

So far, Ed has not had any side effects from his treatment. He receives medications along with his chemo and Avastin to combat nausea and vomiting. His normal side effects of having cancer, a brain tumor, and all his medications have not gotten worse or better. He was informed that 10 - 12 after his treatment he could begin having diarrhea. Ed and my mom have an arsenal of foods and medications on hand to combat it if it happens. Today was the 7th day after his treatment. No diarrhea yet.

Ed also had a follow up visit with his neurologist this week. The neurosurgeon suggested he have a follow-up with the neurologist to see if his seizure medications could be tweaked, as he is still having seizures...usually about two weeks apart, and usually having at least two about an hour or so apart. On a scale of 1 - 10 , 1 being a very weak seizure and 10 being a full-on, grand Mal seizure, I'd say his are somewhere in the middle...maybe a 5 or 6. The neurosurgeon kept his medications the same, but upped the dosage of one and changed the schedule a bit on when to take them. Hopefully, this will eliminate or reduce the number and severity of his seizures.

Ed will go for his second chemo/Avastin IV infusion next Wednesday, June 17, I think. My sister-in-law (B1's wife) will take him on that visit. Hopefully, that visit will go a little smoother. I'll let you know. Ed continues to have his good sense of humor. This past weekend he showed me the thick growth of hair on his legs, arms, hands and fingers, caused by the steroids he takes. He told me he has a job. "What???" I asked. He said yes, he would be on T.V., in a commercial. I am still looking at him with my eyes narrowed. Yes, he said, I am doing a Geico commercial. No caveman suit needed.

Hope is alive!

Ed with son-in-law (Hubster) and granddaughter Courage.

Praise God from whom ALL blessings flow! I got a call from Dr. Splichal's office today (Ed's oncologist)...Ed will begin his Avastin treatment tomorrow! Yeeeeaaaahhhhhh! The patient services coordinator informed me that although Cancer State Aid has not yet approved payment, she is sure they will eventually, and she is pushing Ed on through for treatment! She said if Cancer State Aid funding is depleted, she is sure the drug manufacturer will give patient assistance with the drug.

My brother is taking him to his first treatment. The instructions were to eat a good breakfast and be prepared to have lunch there. This drug is administered via IV and takes hours. The Avastin is not actually the chemo drug, I am not sure of the name of the chemo drug that is taken with the Avastin, but the Avastin is a drug taken with chemo to enhance it and to also act on it's on to cut out the blood supply to tumors.

I thank God that this young lady has worked so hard to get this drug for him and for having patience with me as I call every few days to get an update. I really thought she was ready to crown my head (and not with jewels) yesterday when I called her. I think I could hear her speaking through clenched teeth. But God bless her, she kept her cool and delivered the good news today.

Just a reminder, this is not a cure. If the drug does it's job and Ed's body is responsive and tolerant, a dose of this drug every two weeks for six to twelve treatments will at the most reduce the size of the tumor, at the least it will slow or stop the growth of the tumor. Thank God it came through because as you know, his tumor is growing. His headaches are becoming more frequent and bothersome. He doesn't want to take the Lortab prescribed to him, but for the past few days he has reluctantly given in to our pleads to take it to relieve his pain. I am praying that the drug will start working immediately and relieve some pressure on his brain. No, it is not a cure, but the hope is to prolong his life and better the quality of his life.

Hope is alive. It comes to us in the form of a colorless, odorless, astronomically expensive liquid that will be dripped into his vein through a tube and needle. It comes in the form of stories shared by others who have taken Avastin with good results. New breath of hope comes to us in the form of cards received by family, friends and strangers with well wishes. It is delivered to us by people who have been on their knees praying for healing and gentleness. It is felt in the hands of nurses, doctors, office assistants and kind people we meet with each trip to the doctors. Hope is still with us.